Bethany needs a new liver - or else she could be dead by Christmas

Earlier this year, The Observer launched a campaign for a revolution in organ donation to transform a system that sees three Britons die every day while waiting for a transplant. This weekend 8,000 people are hoping for a life-saving transplant - many will fail to find a donor. With a report due soon on ways of changing the system, Denis Campbell reports on the heartbreaking plight of young children who spend months in hospital waiting, often in vain, for organs to become available

One year old Bethany Dawson with mother Nicki Summer at Birmingham Childrens Hospital. Photograph: Sophia Evans

There is a jaunty pink Barbie balloon floating above her bed, while her fluffy white teddy and an Upsadaisy doll are close by. Bethany Dawson is now a 'delightful' 15 months old, she is walking and talking and described as a happy little girl. She is also likely to die before Christmas.

The thin white plastic tube feeding into her nose, and another, wider clear one into her chest, and the jaundice yellow of her eyes are outward signs of the liver disease gripping her little body, but the biggest tragedy is that doctors could give her a fighting chance of life if it weren't for the brutal odds that accompany Britain's system of getting organs from donors to those in need.

'Bethany is smiling all the time, even though she's suffering from advanced liver disease,' says Dr Girish Gupte, the consultant paediatric hepatologist at Birmingham Children's Hospital (BCH). 'But she needs a liver and small bowel transplant urgently. If she doesn't get it within the next two to three months, she's more than likely to die.'

In her short life, Bethany has already undergone 13 operations and spent more time in BCH than at her home in Cannock, Staffordshire. Wards Eight and Six have been her usual place of residence for most of the time since last March. BCH is where she had her first birthday party in June. 'She used to be very shy. But now that me and her dad almost live at the hospital with her, she's learned to walk and talk and really come out of herself,,' says Bethany's mother, Nikki Summer.

After 15 months of pain and frustration, Nikki and her fiancé Tim Dawson are realistic. 'Sixty per cent of the children who are waiting for the same sort of transplant that Bethany needs to stay alive don't get it,' says Nikki. 'And 50 per cent of those who do get it don't survive for five years.'

This month, they got a brutal reminder of Britain's organ donation lottery with the death of another child on Ward Eight, 18-month-old Ubaid Ali. He was also waiting for a double transplant, but when he suffered an infection he was too weak to fight back. Like Bethany, Ubaid had a rare condition called short bowel syndrome, which affects about one in 2,000 babies. Nikki had become friends with Ubaid's family, especially his mother, Nyila. She and her husband Zulf are now hoping that Bethany gets what she needs before it is too late.

On both wards, a camaraderie exists between the parents of the patients, who all have a serious liver complaint and who range from newborns to teenagers. Around seven of the 12 or 13 patients there at any one time either need a liver transplant, are waiting to go home after one, or are experiencing complications after getting a donated organ. Mothers in particular often spend all day, month after long month, helping to keep their child's spirits up. 'Ubaid and Bethany virtually grew up together by being here for so long,' says Nikki, who has another daughter, Katelyn, aged two.

Red-haired Bethany is just one of the 7,901 people in Britain who are waiting this weekend to receive one or more donated organs to improve, extend or save their lives. Her age means her need is more specific than most. The liver and small bowel have to be from the same donor who, to get the perfect size match, must be aged between one and 10. 'That means it's a lot harder to get a donor, especially with the limited number there are,' says her mother.

Nikki is exasperated by the needless loss of life which is the inevitable result of the existing system of organ donation. Its shortcomings mean that those 7,901 on the waiting list have a 50-50 chance of a transplant. There was a total of 3,524 donors in 2007-08, of whom 854 were 'living donors' - relatives or friends who donate an organ, often a kidney, to someone dear to them. Just one in four of us have volunteered to donate some or all of our organs and tissues after our death.

Intensive care doctors do not always approach the families of those who are not going to recover after being involved in a car crash, for example, to ask for permission to harvest lungs, kidneys and hearts that would give new life to others. And 40 per cent of relatives block the retrieval of organs; sometimes even in cases where the deceased has expressed a desire to donate. That all adds up to a situation where people are dying every day who, in many other countries, would have survived.

Bethany joined the transplant waiting list in March. She is receiving superb care, but her health is deteriorating. Her jaundice is worsening and she has a weekly blood transfusion. For the last 13 days, she has been in yet again after the line going into her chest became infected - the complication of small bowel syndrome which killed Ubaid Ali. Bethany needs a transplant as soon as possible. But her prospects are not good. 'In terms of getting a match they only get one or two the right size every year,' says her mother. 'That means Bethany has only a small chance of getting it.'

Ubaid was another victim of a system which means that many healthy organs from people who are brain-dead, which could help others, are not harvested. Nikki and Tim are hoping against hope that their daughter does not become another one of the 1,000 or so people a year who die because they do not get a transplant in time.

Britain's organ shortage suddenly became a major issue last January when Gordon Brown aligned himself firmly with those - including this newspaper - who believe the country should boost organ retrieval, and thus save lives, by switching to a system, common abroad, called 'presumed consent'. As the Prime Minister, who carries a donor card, says: 'A system of this kind seems to have the potential to close the aching gap between the potential benefits of transplant surgery in the UK and the limits imposed by our current system of consent', he says.

At the moment Britons who want to donate their organs carry a donor card or sign the Organ Donor Register; they opt in. Almost 16 million people, 25 per cent of the population, have done so. One of the problems with opt-in is that many organs that could be used to help others go to waste because people did not in life make clear their willingness to become a donor at their death. Many experts, such as England's Chief Medical Officer and leading transplant surgeon Professor Nigel Heaton (see above right), believe the current system needs a radical overhaul and that, to save lives, we need to switch to 'presumed consent'. Under it, citizens are assumed to have agreed to their organs being retrieved as long as they have not registered an objection during their lifetime - an opt-out system.

Each year close to 1,000 people such as Ubaid Ali die because they have not received the organ they need. That's three needless deaths every day. 'I'm very frustrated that there are organ shortages', said Chris Rudge, the then head of the NHS's organs agency UK Transplant, when we launched our Donor for Life campaign at the start of the year. The former kidney transplant surgeon outlined the difference a transplant makes to a kidney disease sufferer. 'It gives them back a normal life. They can eat, drink, travel, work, have children, they can feel good about life in ways that for many of them are very restricted while they are having dialysis.'

Rudge recently became the Department of Health's (DoH) first 'organ donation tsar'. His job is to ensure that the 14 recommendations made by the experts on the DoH-commissioned Organ Donation Taskforce, which are designed to improve donation rates by 50 per cent inside five years, are implemented.

Presumed consent arouses strong emotions and has generated huge comment from both backers and critics. For the past nine months the Organ Donation Taskforce has been examining the difficult and delicate legal, medical, ethical and practical issues involved. It is due to report within weeks. 'The taskforce is still in the process of taking and analysing evidence and we therefore cannot comment on findings at this stage,' a DoH spokesman said last night.

Patient groups are divided. Joyce Robins, of Patient Concern, says: 'Presumed consent is no consent at all. We've worked for years to get a system of proper, informed consent in the health service, and Gordon Brown is willing to throw it all out of the window.'

Ministers rarely agree a major change to the health system without near unanimous backing from the medical establishment. On presumed consent, though, doctors are divided. The Intensive Care Society represents those who work in hospitals' intensive care units with patients most at risk of dying. In a recent poll of 125 such specialists, the society found that half felt presumed consent would create problems.

Society spokesman Dr Kevin Gunning, a consultant at Addenbrooke's hospital in Cambridge, said: 'The trouble is that we live in a society where people are very much worried about the interference of the state. I think you would find that families would view this as taking the organs - and that would create a tension.' Similarly, Professor John Fabre, an ex-chair of the British Transplant Society, believes it would 'degrade the ethical framework in our society'.

Others think major changes announced to NHS organ retrieval procedures by the government in January will be enough to significantly increase the supply of available organs without risking alarming those who may see presumed consent as latter-day grave robbing, desecration of the dead and the work of sinister doctors.

These measures include trebling from 100 the number of organ donor co-ordinators in hospitals - the people who raise organ donation with families dealing with the grief of losing a loved one - and making payments to hospitals where intensive care units do their best for a terminally ill patient while donation can be organised. Still others feel the switch would be a historic change, worthy of mention alongside advances such as the provision of universal healthcare in 1948 and the smoking bans. While the talking goes on, people continue to die needlessly. Nigel Heaton speaks for a sizeable number in the medical profession when he laments the fact that no good comes from car crashes, serious assaults, accidents and other events that leave people brain-dead, when giving life to others would be easy.

An episode of Casualty persuaded 13-year-old Laura Alexander of the value of organ donation. The plot involved the dilemma of which of two patients - a young girl and an older man - at Holby General who needed a heart, should receive one that had just become available. 'I talked to Laura about how organ donation helps people to live normal lives. She thought this was just amazing,' recalls her mother Caroline, who watched it with her. 'I had carried an organ donor card for years. I explained to her how important that was, and that not a lot of people out there donate their organs. She said, "Mummy, that's a very good idea".' That was in July 2005.

Just two months later, Laura became an organ donor. She was knocked down by a car while walking back to her home in Lisburn, near Belfast, after visiting a friend nearby. She suffered severe head injuries and did not recover. Caroline, 39, decided to donate any of her only daughter's organs and tissues that might be useful to someone else.

Laura's generosity and her mother's decisiveness saved five other lives. Those in most urgent need take priority. Donor families receive only brief, largely anonymous details about recipients, who come from all parts of the UK. But Caroline does know that a 17-year-old boy called Joe with kidney failure got one of Laura's kidneys. 'He wrote me a lovely wee letter saying how big a change it had made to his life. He had so much more energy than before and was looking forward to going to college,' she recalls. A 10-year-old girl called Megan received Laura's entire digestive system: her liver, pancreas, small bowel, large bowel and stomach. She is alive and doing well. Laura's heart went to an eight-year-old boy. The life of Kayleigh, a 10-year-old girl with cystic fibrosis, was saved by having Laura's lungs.

'The letter from her mother was heartbreaking,' says Caroline. 'She said how before the transplant Kayleigh couldn't walk two steps because she couldn't breathe, but that now her daughter was back at school and was normal again.' A girl aged 17 who received Laura's other kidney was the fifth recipient, though she died a few months later.

Laura was in Caroline's thoughts even more than usual last Thursday, the third anniversary of her death. Her mother's grief continues, but she is comforted by the fact that her daughter's passing has helped others to live. 'There's wee bits of Laura still out there. Her death wasn't for nothing,' says Caroline.

'Under presumed consent there would be so many more organs available to the people that need them, so many more people's lives saved and so many families who wouldn't have to go through what we went through.'

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